This wasn’t something I planned on writing about just yet, but after so many messages coming to Raising Natural Kids about it, the story needs to be shared now. For my family, our story is two-fold. This issue seemingly affects/affected my son and daughter, but for now, because her story is much simpler, I will focus on my daughter’s story. In order to tell her story though, I will have to tell the beginning of my son’s.
PANDAS. Up until a couple of years ago, I thought only of the animal when seeing these letters strung together as so. I had no idea that there was an acronym that stemmed from a common childhood illness. When I first heard the term in relation to strep, it came from the mouth of my children’s pediatrician. My oldest son had strep throat a few times by that point and each time I noticed a significant change in his behavior that started a couple of weeks before he would be diagnosed with strep throat. When I mentioned this behavior issue, my pediatrician told me that it may be related to PANDAS, but wasn’t concerned. She simply said that this was a neurological symptom that could come along with it and left it at that (at that point, four years ago, she didn’t know much more about PANDAS and thought it was something that left once the strep throat was gone). What I didn’t know then was that I was lucky she even knew the term, as it had only just come to be in the medical world. What I also learned is that it is something to be concerned about, as she and I both realized that we had a lot to learn about it.
So what is PANDAS?
It’s an acronym that stands for Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections. It “occurs when strep triggers a misdirected immune response that results in inflammation on a child’s brain. In turn, the child quickly begins to exhibit life-changing symptoms such as OCD, anxiety, tics, personality changes, decline in math and handwriting abilities, sensory sensitivities, restrictive eating, and more”(Pandas Network). This describes the symptoms quite simply, but after connecting with hundreds of parents who have children dealing with it, I can tell you that it can be much more. For some it’s debilitating, where a child cannot leave the house as he/she lives in fear of the outside world. For some it includes such outbursts of behavior that makes it seem as if the child is crazy. The child has no control over his/her anger or fears. What’s more is that so many cases of this illness are quite different. Those effected don’t always share all of the same symptoms to the same severity.
Legal Disclaimer: This article is not intended to diagnose, treat or cure a disease. Nor is it intended as medical advice. The reader is responsible for their decisions and their health.
Once I noticed a pattern with my son, I started doing research. This included joining social media groups consisting of parents of PANDAS/PANS children so that I could connect with others going through the same thing (PANS stands for Pediatric Acute Neuropsychiatric Syndrome. It’s similar to PANDAS with a few differing symptoms and it stems from illnesses other than strep). It was because of this research and talking with others, that I had a very good idea about what was happening when my daughter first developed symptoms.
Let me pause here to be clear about two things so that moving forward you can understand where I am coming from with parts of this story.
ONE: The terms and compilation of symptoms associated with PANDAS and PANS is relatively new to the medical community. One neurologist that we saw seven months ago now, quoted me that 1/3 of neurologists believe in these syndromes and that the other 2/3 do not. I am not sure where he got these numbers from. He was clear that most neurologists have seen these symptoms coming from illnesses like strep, but that they did not all believe in the actual syndromes themselves. I learned that I was lucky that the two pediatricians that we saw knew of and believed in PANDAS, as many parents face pediatricians who cannot give an answer about what is wrong with their children. That being said, there are doctors in the United States who specialize in diagnosing and treating PANDAS and PANS, it’s just that they are spread thinly throughout the country. This is changing. Knowledge and acknowledgment by the medical community and by the general population is occurring. Just two weeks ago, Dr. Oz did a segment on it, bringing it to light in the mainstream. It helps that recent studies now show that the brain and the immune system are intricately linked. Columbia University just published an article titled How Recurrent Strep A Infections Affect the Brain. I think that this plays a big role in doctors understanding the connection between illnesses like strep and their ability to cause issues with the brain.
TWO: I do NOT know for sure, as deemed by a medical professional, whether my kids had/have PANDAS, as I did not take them to a specialist to get an official diagnosis. But, here’s what I do know and why I didn’t take it so far as to officially find out if their symptoms stem from PANDAS or from something else: The closest doctor doesn’t take our insurance and starts with a consultation fee of $1,200. The next closest doctors are in adjoining states and have long waiting lists. I have no idea if they take our insurance. From what I understand from people who have seen these doctors (at least the two in the adjoining states) is that they treat using long-term antibiotic use, among other treatments. This is NOT a way I would ever use to treat my children; this is Raising Natural Kids, after all. Antibiotics destroy the gut and I really feel that the gut plays a role in the symptoms of these syndromes. In addition, my children have been on the antibiotics for strep throat itself and I feel that they did worse in terms of PANDAS symptoms when on them (at the time they were too young to agreeably take the natural remedies successfully used for treating strep, such as raw garlic and cayenne pepper). I am NOT trying to say that parents who treat with antibiotics are wrong; if antibiotics are what works for their kids when nothing else does, then that’s progress over what these kids deal with on a daily basis. For me and my kids though, it’s not what I choose to use after researching and seeing great results with natural options that are doable for kids. As far as my children go, both have or did have (depending on the child I am talking about) symptoms of PANDAS during and after having strep throat. Their symptoms could not be explained away. To this day I am not sure that what my son is dealing with is related to PANDAS or not. I do believe that my daughter had PANDAS, but because of what I had already known, I was able to treat it quickly and it completely resolved.
Back to my daughter’s story. My daughter had her first bout with strep throat in May of 2015. She tested positive for strep through a rapid strep test. She also had a significantly high fever not so common of strep, so she may have also been fighting another virus as well. During her illness, she began rolling her eyes to the corner. At first I thought that she was rolling her eyes at what I said, but watching her closely, I realized that she was doing it at least ten times an hour (sometimes more) and that she had no idea it was happening. This eye tic lasted for a few months and was noticeable to anyone around her. In addition to the eye tic, I began to notice that she had a tic in her hip when she walked. This particular tic was only severe for a few days and then happened randomly a few times after that. She also had an OCD type movement where she would use her feet to pull down the ends of her pants, as though they were coming up her leg a bit and she was trying to push them down. During these months of tics (I should mention that we never pointed them out to her), she was super needy of me, not wanting to leave my side and crying/screaming endlessly if I even went upstairs without her. The moment I noticed her first tic (the eye tic), whilst she was still battling a fever and illness, the pediatrician had us take her to the children’s hospital. There we saw a neurologist who deemed it a possible tic disorder and told us to have her checked out in a few months if it was still occurring. That Dr. brought up the term PANDAS to me, letting me know that her team of doctors did not subscribe to the syndrome. It wasn’t until the next day that I noticed the other tics. We waited two months. The tics were still there, so we went for a second opinion from another neurologist. This one also did not subscribe to PANDAS and once again deemed her problems as those stemming from a tic disorder. We were told that there is no known cause and no real treatment for tic disorders and that we should wait it out to see if this would be a permanent condition.
That’s when the mama warrior in me came out. I mean, how could something clearly abnormal, effecting a major part of her body, her brain, have no known cause and no treatment – come on! There were plenty of clues as to what caused hers. I wasn’t going to sit around and wait and see for another second. That’s when I went into motion to treat her using alternative methods. Looking back, I should have started earlier, but I was so overwhelmed at wanting to just get a diagnosis and at helping her get through every day life, that I just didn’t think of it (odd, I know). It took that moment of being told to “wait and see” and “there’s nothing you can do,” for me to realize that I didn’t need a diagnosis of anything specific; I needed to at least start treating for what I did know was going on.
The day after my daughter’s second opinion, I went to get a chiropractic adjustment. I mentioned my daughter’s tics and asked the chiropractor if she had treated kids with tics before. She told me that she had successfully treated two other children who had come to her with similar symptoms. She discussed with me the correlation between tics and the brain and how adjustments help with that. “It is important to understand that chiropractic is not the treatment of any specific condition. The purpose of chiropractic is to find and reduce stress (tension) and interference (altered biomechanics) to the nervous system allowing the person to experience greater function and an overall improved quality of life” (ICPA4Kids). Dr. Robin Stein explained, “stressors can be physical (example: trauma, long-term imbalance or illness), emotional or chemical (example: environmental, food preservatives). These stressors can affect any system or organ of the body which can then manifest as pain, disorders or disease.” Strep infection, like any infection, causes inflammation, irritation and tension to the nervous system. Releasing this tension through adjustments gets rid of the inflammation takes the stress off of the nervous system.
I took my daughter to Dr. Robin the next day. After the first adjustment, I noticed a slight decrease in her tics. After the second, the tics decreased significantly – I am talking down to a few a day. We continued with twice a week adjustments for three or four weeks, then down to once a week, to once a month to now going when I can get there, sometimes every other month. The tics were completely gone somewhere between four to five weeks. Dr. Robin could tell as soon as she touched my daughter’s neck how she was doing, based on the movement that occurred in her eyes as she touched her. The first week or two she could elicit the tics just by touching her neck. As the inflammation came down, this stopped happening.
In addition to the adjustments, I had my daughter on supplements to help as well. I do feel it was the combination of the adjustments and the supplements that ultimately cured her from all of her PANDAS symptoms. In order to find the right supplements for my daughter, as I had no idea where to begin, I searched the PANDAS Facebook groups I belong to and wrote down every supplement I saw a parent discussing that had to do with any one of my daughter’s symptoms. I gathered these herbs and supplements and took them, along with my daughter, to my mom who is a distinguished naturopath of twenty years. I had her muscle test my daughter to see what supplements she actually needed. I highly recommend having someone who does muscle testing, like a naturopath, test your child. There are many more facets of PANDAS that go into what a child can and cannot tolerate, such as those with MTHFR, where certain supplements will cause their symptoms to be more extreme.
Here’s what her body needed and what ultimately worked for her (as each child and their symptoms are different, your child may require a different set of supplements, but this is a good starting point): *This list includes how/why I feel each specific one worked for my daughter. Note: The FDA has very strict rules about any person or company claiming an herbal supplement can fix specific ailments. In fact, many of these supplements had different names and descriptions just seven months back before the FDA made companies have to change them to fit their regulations.
Klaire Labs Vital-Zymes – My daughter’s strep would not go away easily. It was in one of the PANDAS groups that I learned about Biofilm. “Biofilm in the environment is the slippery stuff on rocks. It exists in our bodies too and covers the Strep like it covers rocks in a stream. Strep can hide out while we are treating it. If you want to uncover the Strep so the antibiotics or supplements can get to it, then Proteolytic Enzymes can start eating away at the Biofilm so the abx/supplements actually reach them.” There are other brands as well. The Klaire Labs worked for us.
Turmeric – This is a great anti-inflammatory. PANDAS/PANS has to do with brain inflammation. I feel that the turmeric played a huge role in calming down and getting rid of the inflammation. I didn’t give it in pill form as its healing properties work best when heated, so I cooked with it A LOT. It’s beneficial for the whole family for so many things, so everyone got the benefit. I added it to sauces, soups, stews and even into the water I cooked rice in. It gives the rice a nice yellow coloring.
A good quality fish oil – This was actually recommended by the neurologist. The properties of the fish oil provide good brain and mood support. Barlean’s makes good ones and flavors them so that they actually taste good to kids. Nordic Naturals is an even better brand, but taste wise for young kids, it’s not a hit. I have read from some parents that the fish oils actually make their children’s symptoms worse. I see it a lot in conjunction with Nordic Naturals brand and I am not sure why. I do know that for my kids, the fish oil helped and that the Barlean’s is a good choice for them.
Astragalus – Astragalus has antibacterial and anti-inflammatory properties and is great at strengthening the body to fight against disease. I still give this daily to my kids. I recommend the Cedar Bear brand, as it has a much better taste that other liquid forms. My kids preferred it over Gaia Herbs brand.
Probiotics – These are essential for gut health. Disease begins with the gut and it’s important that the beneficial bacterial gut flora is replenished. You need a quality brand and it needs to be free of the strep strain of probiotics – do not buy one that contains S. salivarius or S. thermophilus when giving it to a child who battles strep on any level. We use probiotics formulated specifically for the blood type of each child: Blood Type A, Blood Type AB, Blood Type B (Blood Type ) in this does contain the strep, so you can stick with combining some single strain probiotics like Bifidophilus Flora Force and L. Acidophilus). I give the probiotics first thing in the morning, opening a capsule and mixing it in with a bit of yogurt and honey to hide the taste. You can also add it to smoothies. Do not use a gummy style probiotic as they are too overly processed. Any good brand will need to be refrigerated once opened.
*update: I recently learned that some strains of probiotics can raise histamine levels. Histamine is often a trigger of PANDAS symptoms. Another Pandas’s mom shared the following with me. I am not sure of the original source.
“Different types of bacteria and probiotics also play a part in histamine regulation. Some probiotics are necessary for proper gut function (where histamine lowering enzymes DAO form), but some strains actually raise histamine levels. The different strains of studied probiotics are categorized as: (1) histamine producing bacteria, (2) neutral bacteria, or (3) histamine degrading bacteria.7-1
Histamine producing bacteria: Lactobacillus casei, Lactobacillus reuteri, and Lactobacillus bulgaricus (Found in most yogurts and fermented foods).
Neutral bacteria: Streptococcus thermophiles (also in yogurt) and Lactobacillus rhamnosus (shown to down regulate histamine receptors and up-regulate anti-inflammatory agents)
Histamine degrading bacteria: Bifidobacterium infantis (found in breast milk), Bifidobacterium longum, Lactobacillus plantarum2, and some soil-based organisms.
Some of these bacteria form histamine when they break down protein in foods, even vegetables, whether the food is in your gut or fermenting in your kitchen. Now you know why I’m skeptical about throwing a bunch of cabbage into a bucket to let it ferment. You just don’t know what you’re getting.”
Herbal Detox – This is a blend only offered by Cedar Bear that serves to help detox the body from any sort of environmental factors including chemicals that enter the body. It offers “a gentle, deep detox. The herbs in this formula work together to purify and condition the blood and help protect and support organs of the body that are often negatively affected by toxicity, especially the liver. It has herbs that are known to have antioxidants, which clear free radicals from the blood, (free radicals are unbalanced molecules that damage health) and many major and trace minerals that are essential to the body. When these minerals are missing, the body tends to absorb harmful substances to try to counteract the deficiency” (Cedar Bear).
Adrenal and Focus Blend – Helps to calm the nervous system.
That’s it – that’s everything I did to help my daughter. I feel that her quick (started treating 2 months after initial symptoms) and full recovery (took 6 to 8 weeks after starting treatment) had to do with the fact that I treated it fairly quickly having had knowledge of what was going on. Some parents struggle for years before getting an answer or determining that their child is suffering from PANDAS or PANS and I think that the longer the brain has been under attack, the longer it takes to heal it. Many parents have success with essential oils and I have read about so many children being healed from homeopathy after seeing a certified homeopath who specializes in these syndromes. This would have been my next step had it been needed.
UPDATE 1/11/2017 a full year to when our daughter started her PANDAS symptoms and about 8 months of being symptom free, different symptoms arose. This time around she had tics involving her raising her arms and pretty bad anxiety having to do with leaving me. They have subsided a bit and there is a lot more to share of her journey, but until then, a major key we are using and feel is helping was getting her genetics looked at and working on her genetic mutations to help her body then be able to focus on healing. We used 23andme to get the results and then had a local practitioner read them and work with us on the right supplements to use for her specific mutations.
Other PANDAS stories: Carrie’s PANDA Story, Camden’s Story of Healing, To The Little Girl Just Diagnosed with PANDAS and CVID
*Please note: I am NOT a doctor :). I am a mom who took it upon herself to help her daughter when no one else could and I am sharing my story to help others. Please take the time to seek professional help, be it a chiropractor knowledgeable in the topic, a naturopath, a holistic doctor, etc.
**I serve as an affiliate for Amazon, and link any products I use in my own home and with my family to Amazon when applicable. Any monies earned help me to run and maintain this blog.